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People Magazine RSD Article

After years of excruciating pain that drove him to thoughts of suicide, John Roach decided to gamble on a controversial new treatment-a ketamine-induced coma.
August 10, 2009

By Alicia Dennis
PEOPLE Magazine

RSDSA: Information on Ketamine Treatment

John Roach looks up at wife Rosemary from his bed in room 133 at the Hospital San Jose in Monterrey, Mexico. "Don't say goodbye," he pleads as doctors prepare to send the burly grandfather form Allentown, Pa., into unconsciousness. "It's okay," Rosemary says. "Pleasant dreams."

Soon, deep in a coma, John descends into a frightening, topsy-turvy world. Scene: He's in a strange house with paintings on the ceiling. Scene: He's watching as his cat rushes into the path of an oncoming car. Scene: He's a World War II soldier fighting on a blood-soaked battlefield. "It was weird and frightening," John recalls of his voluntary, five-day ordeal in late May. "But I needed to do something."

Suffering from a debilitating neuromuscular disorder called reflex sympathetic dystrophy (RSD) , John, 50, is one of about 100 chronic-pain patients resorting to a radical new treatment in search of relief-medically induced coma using ketamine, a surgical anesthetic and hallucinogen sold illegally as "Special K." advocates say ketamine comas can be a godsend for some. "We're giving people in excruciating pain a normal life," says Dr. Robert J. Schwartzman, neurology chairman at Philadelphia's Drexel University College of Medicine; since coma therapy isn't FDA approved, he's sent more than 60 patients to Germany and Mexico. But other experts say the treatment, which costs as much as $ 50,000 with travel, is too risky. "Vulnerable people are getting something expensive and potentially dangerous," says Dr. Norman Harden of the Rehabilitation Institute of Chicago.

Some 200,000 people suffer from RSD, in which ordinary pain escalates to crippling levels. "Think of holding a blowtorch to your skin," says John, whose entire left side was affected after he fell down rotted stairs and tore his rotator cuff in 2002. Because ketamine blocks pain receptors, Schwartzman says, very high doses can restart the nervous system, "like rebooting a computer."

Brandy Sachs, 23, of Christianburg, Va., had spent seven years in a wheelchair after a finger injury and ankle sprain spiraled into all-over agony. "I was giving her pain meds in doses that would have killed a horse," says her family doctor, Jeremy Freeman. Last fall, after undergoing a five-day coma in Germany, Brandy needed months of therapy to relearn how to walk, talk and eat. But now, she says, she's pain-free and plans to start her master's degree: "It's a miracle."

Not always. In October 2008, RSD patient and mother of three Laura Beckett, 47, of Magnolia, N.J., developed pneumonia while in a coma in Germany and was kept under for three weeks as doctors fought to save her. She woke up paralyzed from the neck down and now lives at a rehabilitation center. "It's an understatement to say things went wrong," says husband Karl, though he adds his wife's pain was so unbearable they would likely choose the coma again. Says Schwartzman: 'We've had tragic outcomes. But this is only attempted after every other treatment has been tried."

John, a jovial retired phone-company worker, had tried surgery, physical therapy and heavy doses of pain medication, including OxyContin, codeine and fentanyl. When nothing worked, he thought of ending it all. "I couldn't be touched," he says. "I couldn't hold my wife's hand or sleep next to her. It wasn't the life I wanted."

Back home now, John is amazed that he's been virtually pain-free. Getting regular ketamine booster injections (at non-coma levels) from his physicians, Schwartzman and Dr. Anthony Kirkpatrick, he has removed a protective compression sleeve he wore for years and can once again wear his watch and wedding ring. Best of all, he can walk hand in hand with Rosemary and scoop up his granddaughters for hugs. "I have been missing all the little joys in life," he says. "Now I want to live every one of them."

Did you have the three day/four hour infusions? They slowly increase the ketamine. It isn't the same that has been done in the past. They start off at 30mgs and slowly increase the ketamine. From what Dr. Kirkpatrick told me this is different from the infusions of the past. I would love to know.

Thanks,
Sandy

Quote:

Originally Posted by SBOWLING

Hello Sandy,
I'm glad your daughter responded well to the infusions. I did them in 2007 and I need higher doses so the coma was offered to me in July of 2008.
I have turned it down for now. I am not comfortable with what Dr. Schwartzman from Drexel shared with me about the possible outcome. I have RSD full body with organ involment and he said there was a 50/50 chance it would or wouldn't help me. Due to it being full body he wasn't very hopeful it would help (I respect him for being honest). However, we all respond differently to treatments (that always gets thrown in)
I hope your daugher continues to improve.
Take care,
Sherrie

I did 10days four hours a day in 2007. After the 4th day they were stopped my heart was starting to beat out of control and I wasn't showing any signs of pain relief. It was decided it was too dangerous to continue. Dr. S felt under the coma he could give higher does and control it better. My heart was a concern for me so I have passed on the coma for now.

My name is Judy Hopkins and I was the 46th person to go through the Ketamine coma in Germany. I ended up getting staff infection pneumonia and was in a coma for three weeks, but awoke in complete remission. Unfortunately I relapsed and ended up getting even worse than before the first coma, so I become the fifth person ever to have the coma done a second time. It was a breeze, seven days in and home again after only three weeks, the first time I was in Germany for a month and a half. While I was there, I got to know Laura Beckett's daughter Jill. Laura had gone into the coma a month before me, but was still there when I left. She did not however have pneumonia. She went to Germany with MRSA and when they put in the IV, it went into her blood and spread throughout her entire body making her septic. This situation was not the fault of the Germany doctors and they never hesitated in doing anything and everything to treat her and to keep her alive. When she was stable, Dr. Rohr told her daughter that she should look into getting an Air Ambulance to take her home because she could not fly home on a regular plane. Her family could not afford to get her home, so she remained there for about three months. During that time, the hospital in Germany lost countless amounts of money b/c when you go you sign a contract and no matter how short or long you're there, you pay no more than what you agreed upon before you went there. Finally, they were able to raise the money to bring her home. What happened to her was a tragedy and I feel for her family, but this was not the fault of the doctors and it most certainly was not as a result of pneumonia.

My name is Judy Hopkins and I was the 46th person to go through the Ketamine coma in Germany. I ended up getting staff infection pneumonia and was in a coma for three weeks, but awoke in complete remission. Unfortunately I relapsed and ended up getting even worse than before the first coma, so I become the fifth person ever to have the coma done a second time. It was a breeze, seven days in and home again after only three weeks, the first time I was in Germany for a month and a half. While I was there, I got to know Laura Beckett's daughter Jill. Laura had gone into the coma a month before me, but was still there when I left. She did not however have pneumonia. She went to Germany with MRSA and when they put in the IV, it went into her blood and spread throughout her entire body making her septic. This situation was not the fault of the Germany doctors and they never hesitated in doing anything and everything to treat her and to keep her alive. When she was stable, Dr. Rohr told her daughter that she should look into getting an Air Ambulance to take her home because she could not fly home on a regular plane. Her family could not afford to get her home, so she remained there for about three months. During that time, the hospital in Germany lost countless amounts of money b/c when you go you sign a contract and no matter how short or long you're there, you pay no more than what you agreed upon before you went there. Finally, they were able to raise the money to bring her home. What happened to her was a tragedy and I feel for her family, but this was not the fault of the doctors and it most certainly was not as a result of pneumonia.

I am sure labs were done prior to the KC. Shouldn't pre-existing MRSA have been a contraindication to such an aggressive procedure???

I am sure labs were done prior to the KC. Shouldn't pre-existing MRSA have been a contraindication to such an aggressive procedure???

Yes, but MRSA is tested my a mouth swab and a rectal swab. It is not standard to have that test done at any hospitals in the US, even though we have the highest rate of MRSA and staff infection in the world. Germany hardly ever gets MRSA or staff infection. Their hospitals are twenty times cleaner and more sanitary than the hospitals here. I have had 18 operations, more than a dozen in-patient procedures and treatments and countless out-patient procedures and I have never once been tested for MRSA. After Laura's tragic situation, myself and the woman I went with were the first to have the oral and rectal swabs to test for MRSA. It is a horrific situation that they found themselves in and my heart continues to break for what they are going through, but that situation had nothing to do with neglect, it was just tragic.

Yes, but MRSA is tested my a mouth swab and a rectal swab. It is not standard to have that test done at any hospitals in the US, even though we have the highest rate of MRSA and staff infection in the world. Germany hardly ever gets MRSA or staff infection. Their hospitals are twenty times cleaner and more sanitary than the hospitals here. I have had 18 operations, more than a dozen in-patient procedures and treatments and countless out-patient procedures and I have never once been tested for MRSA. After Laura's tragic situation, myself and the woman I went with were the first to have the oral and rectal swabs to test for MRSA. It is a horrific situation that they found themselves in and my heart continues to break for what they are going through, but that situation had nothing to do with neglect, it was just tragic.

It's too bad that the MRSA screen isn't more prevelant as it is a very sensitive test. In older days, pre surgical lab screens included tests for inflammation, like sed rate and CRP and would have also included CBC, of which any of the three might have flagged this poor patient. That is interesting that Germany has extremely low incidence invasive infections. At the other end of course, is the USA topped out only by Japan. I suspect this is more a function of patient selection, pre-disposing conditions and government cutbacks to our hospitals than a reflection of surgical technic.

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